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Meet Jacob...

 

 

My name is Catherine and I am Jacob's mum. When Jacob was born he passed all of his new born checks and we were discharged with him breastfeeding well, and at a healthy weight of 8lb 8oz. At around 8 weeks, our GP noticed that he wasn't fixing or following on anything and he was not making eye contact. Jacob's muscle tone was also still very weak. At 12 weeks, things had still not altered and so referrals were made to Alder Hey.

Before any of these appointments came around, when he was around 4 months old, Jacob started having seizures. We were rushed to Alder Hey and we stayed there for two weeks while they did every test they could think of. Eventually an MRI identified that Jacob's brain had several abnormalities and several areas were smaller than they should be. An EEG identified that he had Epilepsy and that was going to be something permanent and very hard to treat. Tests on Jacob's vision also confirmed that he had Cortical Visual Impairment and the exact extent of his vision was, and still is unclear. A few months later, we had an appointment with the Genetics Team in the Liverpool Women's Hospital. At this point they told us that they had found a genetic mutation on one of Jacob's genes - the Tuba1A gene. Jacob was diagnosed as having a very rare condition called Tubulinopothy.

Jacob is such a happy and content boy. He loves music and he loves playing with musical instruments such as his little piano, and shaking his maracas. Jacob has developed a lovely cheeky personality over the past few months and love rough play especially with his daddy. He has the most adorable and infectious laugh and loves being around other children. Jacob's daily routine is pretty complicated with all of the medication he is on and the strict diet he has to follow. He requires medication three times a day, and also has his bloods monitored twice a day. Looking after Jacob is also physically difficult. It is hard to transfer him around the home, as he is a very tall 2 year old, and is pretty heavy already. This puts great pressure on my back. Jacob also has daily seizures (approximately 10 a day) and these can be very emotionally hard to witness and cope with. He requires a lot of attention due to his seizures and due to him being immobile. In order for Jacob to play with his toys and engage in activities, he requires help and support.

Over the years I had heard a lot about Zoë's Place. I had often seen the teddy bear logo and the company I have worked for over the past 7/8 years does a lot of fundraising for the hospice. A few friends that I have met along the way since having Jacob often use the services of Zoë's Place and would always tell me about how good it was and how much they benefitted from this service.

At a routine review with Jacob's community Paediatrician, the subject of respite was brought up. I agreed for the referral to be made and soon after, an appointment came up to register at Zoë's Place. Jacob had a couple of day time sessions and automatically settled in well. He was always very happy and content when I came to pick him up and I would always get very positive feedback from the staff.

Jacob's first overnight stay went well, and Mike & I were given the chance to stay in the parents flat upstairs. This was extremely helpful as we were on hand to assist the staff if needed. This also helped me to know what kind of information I had to give the staff about Jacob (ie, how he likes to have his bottle of an evening, the best ways to settle him in bed etc). Jacob has stayed at Zoë's Place on many occasions now. He always enjoys his time there, and I can tell that he is familiar with the building and the staff now, and he seems excited when I take him there.

Jacob enjoys the sensory room the best, and enjoys lying on the bean bags and relaxing in there. Zoë's Place has been such a great service for me and my partner and we have really felt the benefits from having the opportunities to let Jacob stay during the day and overnight. We are able to re-charge our batteries and it is comforting to know that Jacob is happy and well looked after in this amazing place.            

There are lots of ways you can help to support our special babies, just like Jacob. Whether it is a making a donation, signing up to a fundraising event or coming up with fundraising ideas of your own, it will all help to make a huge difference. Find out how you can help by clicking below...

   

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